Hello, I am Mere. I suffer with autoimmune spondylarthropathy, FMS and now ideopathic PN with gastroparesis. I was hospitalized for three days when my stomach filled up with food and bile and became, well, hurt.

Alongside these symptoms are tingling in my feet and hands and numbness in my nose, mouth and tongue. The gastroparesis is better and the PN is better but evident after three months. I manage diet carefully which borders on obsession and use medications to propel food through. Although, this is all 'new', I have been hospitalized a couple of times in the past 20 years with unexplained pain and the autonomic, PN symptoms. They did not know what what was happening at the time. So, apparently, it comes and goes.

My GED says the PN and gastroparesis are not related (what?)! My long-time Dr. the Rheumatologist says too much tylenol and verapamil are to blame so I am tapering from tylenol containing substances and have halved the Verapamil.

Can anyone here identify with the GP along with PN?

Hope everone is well.

Mere

Interesting Mere!

Two years ago I started to get body wide neuropathic pain and at first it was diagnosed as Peripheral Neuropathy. I have my doubts about that now and believe it is more likely to be neuropathic pain associated with (Fibromyalgia) FMS which I was diagnosed with in January this year.

Also in January this year I was diagnosed (by a Gastroenterologist) with Gastroparesis. My Gastroparesis is fairly severe and although I am on motility drugs (Domperidone) I can only tolerate fluids and fairly 'runny' pureed food. I have lost 19kgs (41lbs) since December.

I've seen a lot of doctors over the past two years and no-one has given me any answers. However the latest Rheumatologist I have seen believes all these symptoms are very connected to FMS as he has seen them time and time again.

I don't know whether FMS will be the final piece to the puzzle or whether more symptoms or diagnoses (eg. autoimmune) will emerge over time but I know that with Lyrica my sleep has improved immensely and my energy is more sustained. I still have all the stiffness and other symptoms however the muscle aches have improved lately with three times per day pain killers.

It's all very complex I am concluding and one doesn't get much help out there with putting all the pieces together!

Hi. I think I have read others here who have had PN and gastroparesis. Maybe do a search. I think and could be wrong kemb has that. Obviously I am not a doctor but I would think that if other nutrition issues can be related to PN then possibly this could be. Like if one is diabetic or has low b12. Have you seen a neurologist?I hope you feel better.

Mer
did your dr say that the tylenol was a cauuse of the PN or of the gastroparesis or both?? and how is the PN and the gastroparesis related? thanks,,,i take tylenol,and was wondering,,i know that antinflammatories are hard on the gas track,,please let me know...thank you,,,,,bobber

Hi Mere, I too am curious about the Tylenol and Verapamil possibly being a cause. I take different drugs for hypertention and Verapamil is one of them. I was just with my hypertention specialist the other day and asked him about my drugs. He said there was no connection to my PN and my medication. Now I am am confused.

Thank you all for your posts. My goodness, I feel so much better hearing from others that are going through similar issues. Please don't take that wrong, I do wish us all well and feel bad that we have to meet under these circumstances.

Megan, I am so sorry that you are having to sort this all out with your Dr's. and that they are confused. It is so difficult. I did not have any diagnosis for 17 years but was fortunate in finding my Rheumatologist who specializes in Fibromyalgia at a University Hospital. He then found the Spondylarthropathy (it is usually a Male disease and apparently presents differently in women). I will never forget the frustration . I hope you get some answers soon. You are correct about the Fibromyalgia. It is such a crummy disease and I was also wondering if all of this is related.

I am also beginning to wonder if I can ever eat normally again. It hurts bad every time I eat and I am still staying with pureed foods, soups, soft things and sometimes sushi (if I am a good girl). Domperidone is not available in the US so I take Reglan and Donnatal. I have also lost lots of weight, 35 pounds since April. I hate having food and eating become an obsession and a bummer.

The PN just seems to 'go' with the GP. Perhaps I am wrong but it really feels a little to coincidental. I have GP pain and then my mouth is numb and my blood pressure is low. It is cyclic.

Regarding the Tylenol, perhaps I should elaborate a bit. I have also had some surgeries that render my intestine a bit re-routed and the bile spills into my intestine because I had my gallbladder removed when I was around 25 years old (I am middle aged now). They did a sphincteroplasty and that leaves the bile duct wide open so that bile is dumped into the small intestine. I hate this stuff...

Any way, my stomach and small bowel are irritated and apparently the Tylenol is adding further irritation, thus, worsening the gastroparesis. Verapamil is known to affect the autonomic system in high dosages. I was on 480 mg per day for tachycardia and migraine. That is why I have lowered to 240 mg Verapamil and am working at lowering the Tylenol. I take Tylenol because it is in pain med and I use that 2-4 times per day for pain. I understand that narcotics can also slow the GI tract. It is all a vicious cycle. Please do know that I am not a Dr and am only following the advise of my own Physician.

Bobber and Hope15, Verapamil and Tylenol are good drugs and probably do not usually cause any problems. These problems are probably unique to me and have something to do with how my body handles them.


I am not certain if my Dr is correct about all of this but I do trust him and anything is worth a try. daniella, thanks for the info.

Thanks for responding to my Post. I am sorry it is so long.

Mere

These are definately related - I ate like a horse before my PN - now with heridiatary body wide PN and autonomic neruopathy live on meds and liquids only to try to digest the liquids and maintain some weight - I have severe GP - most doctors dont have a clue what to do about it... if your lucky you neuro can diagnosis it but you have to be treated by a GI doctor who is a motility specialist if its bad (and they can be tough to find but be persistent) - hang in there....

kmeb,

I am so sorry that you are so ill. Thank you for the advise, I will think about seeing a motility specialist if I don't feel any improvement in the next month. Currently, a GED is treating the GP but it bothers me that she does not even want to consider that the PN is related.

Please feel better...

Mere

[QUOTE=Mere;542722][SIZE=3]
I am also beginning to wonder if I can ever eat normally again. It hurts bad every time I eat and I am still staying with pureed foods, soups, soft things and sometimes sushi (if I am a good girl). Domperidone is not available in the US so I take Reglan and Donnatal. I have also lost lots of weight, 35 pounds since April. I hate having food and eating become an obsession and a bummer.
QUOTE]

Even though Domperidone is not available in the US, if a US doc gives you a script for it, you can get it through an online canadian pharmacy. I get mine through canada drugs, it has worked wonders for me and has less side effects than Reglan.

I have bith PN and Gastroparesis, and symptoms of both are what landed me in the ER that resulted in a diganosis of T2 Diabetes.
Within 3 months I was in the hospital 6 times for nausea and uncontrolled vomiting. I would wake up in the mornign, roll over and vomit my saliva from my stomache from the night before. IT HURT! Eventually with diet modifications, getting my BS under control, some adjustments to medications and domperidone, symptoms subsided from the gastroparesis. I would recommend avoiding anything that could aggravate your stomach. For me it meant switching from Metformin to Insulin and not using narcotic pain killers wich were prescribed after back surgery shortly before all that happened. I dont know about Tylenol, but avoid Advil as well. Right now I just take Domperidone for stomach as needed and Gabapentin/Cymbalta for my PN. Insulin for the Diabetes. Statin for Cholesterol. Oh yeah, I also take Omeperazol (Prilosec) for the stomach, apparently I have a hiatal hernia and barret's esophogus, probably from all the vomiting. Like I said, I was in Hopsital six times and thought I was going to die, they were talking about feeding tubes and electrical devices being implanted in my stomach. I lost nearly 40 pounts because of malnutrition from the stomach problems. Now, this week, for the first time in a year, I ate popcorn. Hang in there, it can get better. Sending prayers your way.

Hi

It makes sense to me that the two would go together. I am a T2. It's been pounded in my head that PN from high glucose can cause problems all over the body, GP being one of them. Even with out the diabetes, it can go together. I am not familiar with the treatment options for it, sorry.